This communication disability is called selective mutism. It’s really an unfortunate term for the condition because the word “selective” sounds like a choice. It’s not a choice. There are times when she cannot force words to come out of her mouth.
I haven’t talked a lot about my daughter lately, and especially not about her mental health issues. I’m very careful about violating her privacy, especially since she reached the teen years. But this time, she came to me and asked me to write about this issue, and her experience.
“Most of the time,” she said, “It would be easier for me to just speak than it is to deal with people who get mad when I don’t talk to them. I don’t want to be mute.” Teachers, principals, even friends get angry with her when she doesn’t respond to them with spoken words.
Old friends she hadn’t seen for a while insist they know she can talk and get irritated with her silence, often even assuming that she is mad at them, or even that she thinks she’s too good to talk to them.
So, what is Selective Mutism?
Selective mutism is a rare disorder, a communication disability, affecting less than 1% of kids. It is related to anxiety disorders, and often co-occurs with autism and hyperlexia. There really isn’t a lot of information on this condition, but it is one in which an intense anxiety reaction causes a freeze response and prevents the individual from speaking aloud. Sometimes this situation can prevent communicating altogether, but more often sign language, gestures, and writing can be used to respond.
This becomes especially problematic when others become angry and demand a verbal response, which amps up the anxiety even more and makes the problem worse. Traumatizing someone for having anxiety wont reduce their anxiety.
Selective Mutism keychain and other items available at my Zazzle shop. These items allow non-speakers to convey their communication disability.
How can I help?
Interacting with someone experiencing selective mutism can be very much like interacting with someone with a stutter. The most helpful thing you can do is to exercise patience. It can be frustrating, I know. It’s very difficult to remain calm while you’re waiting for a response, but the more demanding you are, the more frustration you demonstrate, the more you behave as though they’re being defiant, the worse the situation gets. Allow them to respond on their own terms and you’ll actually get more information than if you demand that they speak.
Be kind.
Be patient.
Pay attention to their non-verbal behavior.
If you think you understand but you’re not sure, you can ask. “I think you’re saying you want to go home. Is that right?” Then they can nod or shake their head in response. Based on that response, you can ask more questions.
If you have writing implements available, you can offer those. My daughter keeps a pad of sticky notes and a pen with her at all times. When people allow her to respond that way, they get the most complete and accurate response.
Share this story. The more people understand what selective mutism is, and how they can help (or at least not make the situation worse), the more it makes the world a little kinder and helps people living with this condition.
The simple act of being aware of selective mutism and understanding that this communication disability is not a choice, makes a difference, even if you do nothing else.
Type of Cancer:
Breast cancer – Stage 2B/3A Invasive Ductal Carcinoma
with lymph node involvement, Her2 positive, highly aggressive
stage at diagnosis:
Stage 2b
Treatment Plan:
adjuvant chemotherapy, double mastectomy, expanders,
followed by gated radiation & an additional 6 months
of Herceptin infusions
Current Status:
NED, baby!!
How did you tell your kids about the cancer diagnosis?
I told my 3,3 and 4 year olds that Mommy was going to be sick for the Fall and will feel better in the Spring. We explained that Grandma was going to stay with us for awhile so she could play with them while I was at doctor appointments.
How did your kids respond?
They responded REALLY well. We made the head-shaving day into a party. We took tons of pictures and my kids helped pick pictures for my cancer blog.
What are some things you did that worked really well for your family with regards to dealing with the cancer, and treatment, while raising children?
I told them what I knew. I didn’t overload them with information. I faked it.
After the first treatment, I knew I would not be very active about 2-3 days after treatment. I would tell them that I was going to chemo and that I would be ready to play with them in 2 days. Until then, my husband and my mom kept them busy at the park or on day trips. They didn’t really ever see me sick.
Is there anything you wish you’d done differently?
Nope.
How did the impact of cancer change as time passed, and your children grew? Did it change?
Right now, they are obsessed with cancer ribbons and people with cancer. They are caring. They are blissfully unaware that I may have a recurrence one day. I think they think everyone goes through this at one point in their lives.
Do you have concerns about the long term impact of your cancer on your children?
I’m afraid I will die of cancer and my children will lose their mother.
What advice would you give to other moms who are diagnosed with cancer?
Be honest, but keep details to a minimum. Don’t talk about dying.
Keep the kids out of the Oncologist’s office, chemo room, etc. They don’t need to see or remember that.
Spend as much time cuddling your kids as possible even though you may not feel like it.
They are feeding off you. They sense your fear and they need to know that you’re still there.
What concerns or fears troubled you the most?
repeat scans, aches and pains
How did you deal with those fears?
honesty, anti-anxiety meds, blogging
Have those fears and concerns changed over time?
I don’t worry as much. I reach out to God when I start to worry.
I appreciate every day.
What was your best moment?
Finding out they got all the bad cells out during my mastectomy.
What did you do to take care of you? How did you splurge on yourself?
I didn’t really do anything. I wasn’t in the mood for much, other than a little shopping here and there.
Were you able to get help from friends and family members while you were going through treatment?
Yes! My neighbors set up a meal train, Pink Daisy helped me a ton and my mom stayed with us to help me with the kids so my husband could still work.
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
I was horrible about asking for help. I have no idea how to do it gracefully.
Did you have an online resource that helped you through this experience?
just google, I googled EVERYTHING
Did cancer/treatment impact your relationship with your spouse/partner?
It made our marriage stronger; he’s my biggest cheerleader.
Do you have any relationship advice for young moms dealing with cancer?
Be patient. Your family isn’t psychic and they have no idea what you are going through mentally and physically. When you feel like exploding, take a deep breath. They’re trying….and this is probably harder on them than it is on you.
What is something you wish your friends and family members understood about your cancer and its impact on your life? What would you tell the friends and family members of other mom’s diagnosed with cancer? What would you want them to know about what she’s about to go through, and how best they can support her?
No one understands the constant fears that are always in the back of your mind. Every ache, cough, pain may be a sign that the beast is back.
Just because you have completed treatment, it’s never really over.
Were there any cancer-related activities or events in which you participated that you think were especially helpful to you or members of your family?
The Susan G Komen walk in Minneapolis was amazing! The amount of survivors and supporters was such an inspiration. I will go yearly!
Are there any resources that you recommend? my blog!
I talk to tons of people who are undergoing cancer treatments. I have had almost 150,000 page views in a little over a year.
It’s amazing how many people reach out to the internet to find answers and someone to relate to.
I blogged from the day I was diagnosed and posted pics throughout the entire process.
Yes, I’m the shy girl. You, in the back, that just snorted – I heard that.
People who have known me for a long time may not realize how shy I can be. But the truth is, especially in cocktail hour, conference-type settings, I’m awkward silence girl. These events stir up all kinds of anxieties in me. I sit there and rack my brain trying to think of something to say – and the harder I think, the longer and more awkward the silence gets, which makes it even harder to think of something to say. It’s a deep, and endless spiral. And that’s if I manage NOT to blurt out something stupid, or nonsensical, or inappropriate, or offensive.
Conversing is so different from writing. There’s no opportunity to edit while you are speaking. Time delays are built in to written conversations, and expected, even when chatting or tweeting. But when you’re in a live, real world conversation, all bets are off. You’re out there, on your own, flying without a net.
Wine helps. A little.
More wine helps a little more.
Even more wine helps me nap right where I’m standing.
Unfortunately, most conferences start before the cocktail hour. But seriously, I do need to learn how to participate in a conversation without that kind of lubricant.
How do you do it? How do you keep a conversation going? Even if it’s with someone you’ve been dying to meet for years. Especially if it’s with someone you’ve been dying to meet for years.
How do you bridge the gap between standing alone in the center of a packed room, and walking up to someone, or a group of someones, and saying “hi” – and then what do you say next?
My pulse is racing while I write this. It’s a terrifying prospect for me.
I spent the day Saturday at Bloggy Boot Camp Seattle, which was, in a word, Awesome. But it was also, among other things, a networking event: talking required. I learned a lot – but of course, one of the biggest benefits of such an event is the opportunity to meet other bloggers. That meant sticking my hand out, and walking up to someone to introduce myself. And I did it! Most of the time without tripping over my own feet, or getting too terribly tongue tied.
There were still those moments where I stood in the middle of the room and surveyed groupings of people deep in conversation. What were they talking about? Could I easily join this conversation? Was anyone else also looking for someone to talk to? Or were they, like me, pretending to look busy so they didn’t look pathetic in the middle of the room silently trying to figure out who to talk to and how to start a conversation?
One of the brilliant bits of planning on the parts of the amazing ladies who organized this conference, was assigned seating that changed with each presentation. This meant that every couple hours or so, I was at a different table with a different group of bloggers, and it made it so much easier to make introductions, start conversations, and meet a larger number of people.
And the people who attended this event were just wonderful. From the moment I showed up to check in, an hour late (another story for another time), I was overwhelmed by just how amazing and, more importantly for me, approachable, everyone was. Superstar-blogger MamaKat has been one of my blogging heroes for years, and she got up and gave me a giant hug when we finally met at the conference. JennyOnTheSpot sat down next to me at lunch, and actually got me to talk a bit about myself to the table.
So many amazing people, and I’m still a little start struck and in awe of the entire event.
I learned a lot, too. Not that I have actually applied anything I learned yet. For instance, Danae Handy and MamaKat led an amazing breakout session on writing. They didn’t just tell us to apply the narrative arc to everything we write; they actually showed us how to apply it to a blog post. For instance, this infernal post that you have been reading forever because it just wont end (thank you for sticking with me, by the way) would fit beautifully into a hero’s journey format.
I would be the hero (I like the sound of that), and my quest would be to summon the courage to make more connections (and maybe even friends) at a networking event, the antagonist would be my shyness and insecurities, my allies would be the other amazing people at the blog conference and the speakers who all seemed to do a great job of building my confidence as well.
I would build the story in ever increasing waves of tension as you follow along through my attempts to initiate and navigate through conversations, and triumph with me as I leave the conference with a head full of great ideas, a belly full of wonderful wines, fists full of schwag and the business cards of other bloggers, and most importantly, my confidence through the roof. In the end my anxiety would be vanquished, and I would be the queen of the bloggers (or at least the queen of CoffeeJitters.Net) and then my allies would be rewarded with loads of link love (which I’ll try to do anyway). Those things happened, I just didn’t write the post that way. But I can totally see now how that structure would improve this monstrosity.
See, I get it Danae. I really do. But, I also know myself well enough to know that any thoughts of rewriting this 1000+ word post are little puffs of nothingness that will never happen – especially while I”m in the middle of this 4000 mile road trip. So the post goes up as is.
The conference was worth every penny, and worth every moment of awkwardness. I feel a little more confident in what I’m doing as a blogger, no one bit me or gave me a why-the-hell-are-you-talking-to-me look while I was at the conference, I made some new friends, and now it’s time to put this post to bed and get some sleep. We’ve got a long drive ahead of us tomorrow. The next post will come from 600 to 900 miles away, and maybe from a different country. Not sure yet. We’re flying by the seat of our pants.
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And the people who attended this event were just wonderful. From the moment I showed up to check in, an hour late (another story for another time), I was overwhelmed by just how amazing and, more importantly for me, approachable, everyone was. Superstar-blogger 